A recent Washington Post article discussed the topic of ultra-expensive drugs for rare diseases, and why pharma companies are willing to help foot the bill. The article specifically references a child with spinal muscular atrophy, a life-threatening disease that affects one in 10,000 babies each year. The only treatment, Biogen’s Spinraza, costs $750,000 for the first year and $375,000 annually after that. Drugs that treat “orphan diseases” for tiny patient populations are increasingly attractive for pharmaceutical companies because of the high prices they can charge.
However, it’s in the drug companies’ best interest to make these drugs accessible to their small patient base. For instance Wall Street analysts pay close attention to individual patients’ experiences when projecting the financial performance of the drug maker, in this case Biogen. Because copays are just a small fraction of what the insurance companies have to pay out, drug companies can still make money and protect themselves from criticism. Biogen’s assistance program benefits them in another way as well. They ask patients to sign a privacy authorization that gathers their health information for 10 years. This information can be used for “market research and other internal business activities.”
